I'm back and so is the cancer

Things have been moving rather fast for me these past two weeks. In October of 2006 I had the middle right lobe removed. Adenocarcinoma Stage 1A. This month when I went for my pet scan two spots showed up. One was where the middle lobe was removed and the other was in the apex of my LL lung. I had the pet scan and only the LL lung spot (8mm)showed activity with an SUV of 2.5. The surgeon was going to try the Vats procedure on me but could not find anything so he went for the slice her open one. He still could not see anthing but with his magic hands felt around the area and was able to feel it and cut it out along with about one tenth of my lung. The full pathology report has not come back yet. I do know it was again adenocarcinoma and that all the margins were clean. I still done have the rest of the information on the cell type of the tumor, or the limp nodes which will determine if I am still a Stage 1A or I have stage 4 lung cancer. It has put quite the damper on Christmas. I just don't understand and neither does my primary care doctor how they could come back with a stage 4 dx when right now there is no sign of cancer anywhere in my body. Have had all the tests including a colonostopy. Has this happened to anyone else? Everyone - thoughts on the subject please. I am a basket case.
Comforting (((HUGS)))
Kneesaa

By SusanL1
Posted December 24, 2008 at 5:06 pm
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Kneesaa. I am so sorry to hear your news. Have they diagnosed you with Stage IV or are they waiting for the lymph node biopsy? Try to think positive until all the results are in. My thoughts and prayers are with you.
Susan

By susie2
Posted December 24, 2008 at 6:15 pm
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I was diagnosed stage 1b had a lower left lobectomy and chemo for four months. Well four months later scan showed nodule activity in right lung. The oncologist said i can call it stage 1 with metastisis now or stage 1V. Well 2 years later i am still on chemo but i feel good and it hasnt left the right lung but hasnt spread either.
Dont worry, whatever the results there is good treatments, my moto is dont worry about it, you cant change anything so just have a great Xmas!!
Susie x

By Kneesaa
Posted December 24, 2008 at 10:16 pm
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Hi Susan,
Thank you for your reply. To answer your question - no I have not yet been diagnosed as Stage 4. What they are telling me is they have to test the tumor and see if it is a new primary or it has matastised from the tumor that was removed 27 months ago. That one was 1.5 cm, The one they removed on Thursday was 8mm, with clear margins. If it was a new primary I am still considered Stage 1A but if it is a matastisis I will be Stage 4. The thing is both tumors have been surgically removed and there are no other hot spots showing at this time. My body is clear. How can they stage me as anything at this point?
Kneesaa

By windrider
Posted December 25, 2008 at 6:03 am
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Kneesaa,

I hope you get some definative information soon so you and your onc will be better able to decide how to deal with the beast we call cancer.

All good wishes to you.

Peggy

By claires
Posted December 25, 2008 at 8:40 am
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I am sorry you had to go through this again. I had a similar situation around that bought me all this time, though, yes, I am now and unexpectedly stage 4. Still, my family grew and I got to see it all! Good luck.

By SusanL1
Posted December 25, 2008 at 10:33 am
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Hopefully they will be biopsying the last tumor to find out. When they diagnosed me, all they did was a fine needle biopsy from a lymph node in my neck that was enlarged and from that they were able to tell my staging (Stage IV), where it started, and which was the primary tumor. Science is amazing. I will be praying that it is stage 1 by as Peyz said, if it turns out worse, you can stay positive and fight it. Good luck.
Susan

By Kneesaa
Posted December 25, 2008 at 1:07 pm
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Thanks to all of you. You guys are wonderful. All tests came back neg. The spot was removed and I am just now waiting for the limph nodes report to come back. I already know they got it all, it was only 8mm and it had clear margins which the oncology PA said was a good sign. I know this is confusing but even if the nodes are clean, if this little spot was NOT a new primary I will restaged as a IV. Stage IV with no cancer anywhere in my body. Go figure!!!!!
HUGS to all and I wish you all the best of Holidays.
Kneesaa

By magazine2
Posted January 4, 2009 at 8:36 pm
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Hi, I am also sorry that you had to go thru that again, its a hard one. I am still recoup. from mine. I had my low right lobe removed and 2 upper right spots wedged out, I had the open one also. I have the kind though that chemo or radiation does not work on, its multifocal and its the BAC, which is very slow growing, but has sure scared me and I also have radon in my home which I just found out and now I am trying to fight that also. Our live sure does change, I guess I will be going back to work in about 2 weeks to a month. But hopefully part time at first. Have any of you had this type of cancer? (bronchoalveolar carcinoma?)

By Kneesaa
Posted January 4, 2009 at 10:47 pm
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Hi Magazine,
The type of cancer I have is adenocarcinoma- bronchoalveolar. Thats what was written on the path report. My last one two years ago was described as
adenocarcinoma with bac features. I also live in a part of the country that has a lot of randon. My house sits on ledge. Makes you wonder huh?
Kneesaa

By linnea
Posted January 5, 2009 at 9:21 am
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Kneessaa and magazine2--I also have BAC. It is slow growing and when it spreads--it tends to stay within the lungs rather than migrating to other organs. I was dx stage IB in April 2005. I was restaged as a IV this summer, because the cancer was in both lungs (I had a lower left lobectomy originally, so what was left of that lung) as well as the mediastinal nodes. I also had no cancer anywhere else in my body--just the damn lungs (too bad they are so essential to survival!). I understand very well how frightening the prospect of being labelled a stage IV is. Truth is--I was surprised when I found out that I was now a IV. First of all--I wasn't thinking of my other lung as a seperate organ, and I was also surprised that there was no gradual transition--how do you go from I to IV? At any rate--those are just numbers and their purpose is to indicate appropriate treatment. They certainly do get our attention though.
There is hope at any stage. The number you are assigned is not a guarantee of either your survival or your imminent demise! Just try to line up as many positives as you can--good treatment, good food, exercise, good friends, a fighting spirit, and don't concentrate on statistics. And here's to good luck as well!

By mitziger
Posted January 5, 2009 at 9:22 pm
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Wow doesn't sound right to me. I hope you have gotten the results back and they were good since I have not seen a post from you saying what they truly found. Prayers are with you that they were wrong and you will be fine. Arletta

By mitziger
Posted January 5, 2009 at 9:41 pm
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Magazine2 sounds like you have the very same cancer that I have, only mine has been in the upper lobes and spared the bottom ones. They told me this cancer does not metastisize to other places but only within the lungs. As far as they could tell there were no lymph nodes involved either. If it spreads, it generally spreads within the lungs and for this reason could not stage it. Mine is multi focal too..... I had nodules on both lungs but nothing showed up on pet scan earlier in December, showed no hot spots or anything. But looks like that means nothing that it can come back anytime. Arletta

By Kneesaa
Posted January 5, 2009 at 11:04 pm
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Thanks Ladies,
Every bit of information helps. I am still having a hard time being labled as a Stage IV when there is no cancer (at the moment) in my entire body. May I ask you all to be my friends?
Kneesaa

By magazine2
Posted January 9, 2009 at 11:13 pm
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Hi Mitiziger

Yes it sounds like we do have the same type of cancer. I still have cancer in one of the margains, they got the rest, node all clean, they are going to watch the one I stated, he removed the r low lobe and wedged out the r upper lobes in 2 spots, it just seems that either he did not take a big enough margin , I am not sure. I dont want to go thru this surgery again, its a very painful one. I was not sure I would make it thru, I am doing better now, my anxiety level is high all the time, I am trying to eat better, but it sure is hard to find a good diet that at least taste like food, but I am determined to eat better as I heard it does help. I hope that all is well with you . Do you cough. I still cough and I heard from other people that it sometimes takes a long time to go away. Its painful in the chest area when I have to cough.
Have a good weekend ...

diane

By mitziger
Posted January 10, 2009 at 12:04 am
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Magazine, yes I can see why your anxiety level is high, did they give you xanax or something for that. I take one at bedtime and it sure helps me sleep most of the time. I am sorry they left a spot. My pulmonary doctor said it can come back and even be a different kind than the first one and I have a friend that happened to but she is ned for 6 yrs now. She goes to cancer treatment center of america. No I really don't have much of a cough, just occasionally from sinus it seems. It amazes me, have always been told my lungs were clear and oncologists this week said my lungs sound fantastic. I know now that doesn't mean much. Do hope you get something for your anxiety, it is a real relief when you do. Do not be afraid to ask for something and I am sure you do hurt, I only had the wedge and it hurt like the devil. It has been since August 18 and I still have some pain. Course I am older too but pretty healthy otherwise. I feel bad they didn't take enough when you had the surgery, did you go to a cancer center? You can do it magazine and beat it, If I can fight it at my age you can too. Keep your chin up, good luck and God Bless and keep you safe. Arletta

By magazine2
Posted January 10, 2009 at 7:36 am
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Hi thanks for responding. I will need to get something to sleep, I wake up usually really early to early and just lay there and stress. What type of diet do you do? That is a problem with me, making sure I am eating what I should be. I want to beat this and dont want that cancer that was left in me to spread , I want to try and control my cancer with diet and whatever I can do. I cant go to the cancer center, my ins. does not cover it. I have aarp medicare complete, the medicare hmo. Terrible insurance. I alays thought I was in good shape, but guess I was wrong. I am 67 by the way, look younger, genes I guess, I just feel alone alot and I always hoped I would meet someone one day, but now with this cancer, I feel I cant impose that on anyone. I cant retire, cant live on just my social security, so that is also on my mind. I also worry about my daughter, she is 26 and I am really worried how she will handle me being gone, of course that is not going to happen right, As you can see I am a worry wart. So did they get all of yours when they did the wedge. He told me if he has to do surgery again, it will be the open one, the big one and wow its horrible.

Well I am going to try and lay back down again and see if I can fall back to sleep. I enjoy your email. thanks so much. It just helps to have support on here so much.

diane

By magazine2
Posted January 10, 2009 at 7:41 am
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Hi claires,

How are you doing, how long have you had this cancer? I ws told slow growing, but it still does not make me less anxioux. I am having trouble getting thru this, everyone says live every day to the fullest, but its hard not to think about what you have, this horrible disease. What have you been thru with this and now what treatment are they going to try. You got this far, so now you can get further.. right.

diane

By magazine2
Posted January 10, 2009 at 7:45 am
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Hi Kneessaa,

I had a man out yesterday on the radon, and its going to get fixed this month, but of course the damage has been done if this is how I got this. Are you doing ok? I am always anxious and I hate it. Cant sleep good, hurt still and now that the path report showed some still at one of the margins (where he did the wedge) the other ones were fine, it could mean possible surgery again in the future, I have my first ct in 7 weeks and they will see what is going on. I am just hoping that nothing changes or grows. I have been told that you can go a long time with bac by just watching it. My doctor thinks that I could have had this a long time since it is so slow growing. I have read it can get agressive, but dont know if you know of anyone that this has happened to.

I will keep you in my prayers, all of you..

diane

By erinroro
Posted January 10, 2009 at 9:06 am
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Diane,

You are definately a candidate for Xanax or Ativan!!! I do not think there is a LC person on this site that is not on one or the other! Stress is the beast's friend, so we want to limit the amount of stress we have... Talk to your doctor! I have Xanax, but it sounds like Ativan is the drug of choice for stress. Do it!!! It makes a world of difference!!!

Erin

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